TRIPLE POSITIVE GROUP
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Awnoo - If you haven't already come on over to the Taxotere,Carboplatin, Herceptin thread.0
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Awnooo - welcome but sorry you have to be here. I had a VERY bad headache only on the first TCH. Have you reported these SE to your MO? I found that I could not tolerate the Zofran prescribed for nausea, it does carry a headache warning. Has your MO prescribed an anti-fungal for your mouth issues? I also had a UTI after tx#2, I believe mine was from irritated soft tissue from the chemo rather than low white count, Neulasta kept my WBC up. Are you receiving Neulasta after your tx?
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Hi Arlene A
I will be googleing what that cold cap blog is Special K, I called the oncall onc. for every problem and they called in medicines. I'm concerned about those aches and the migraine as I dont know any other chemo person going through that but they're telling me it's all from the Neulasta shot... ?
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Awnooo - I have seen some other TCH ladies get migraines, don't know how to suss out whether it is the chemo or the Neulasta. Lots of anecdotal on the first tx being tough, especially with regards to the headache. As I said - I didn't have nearly as severe a headache on subsequent tx, so hopefully will be the same for you. The first Neulasta is usually the worst because it is the first time your bone marrow expands, did you take Claritin prior to your injection?
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Hi Just recently dx as being possibly triple positive. Initial report showed er+ pr+ her2- Today went to onc to discuss chemo planned on ACx4 and Tx4 and still waiting for clear margins after 2nd re-excision. MO said yesterday when she read pathology report there was a second population of cells that were er+ pr- and her2+. She was going to have them relooked at Dana Farber and present them to the tumor board next Tuesday and I will meet to discuss results on 11/21. What is the chemo regime for her 2+ tumors? Has anyone had a change in status like this? I was initially told DCIS then microinvasion then positive lymph node 2 rexcisions without clear margins now this! Every time I go to the DRs it seems to get worse! I just want to get the treatment started! Thanks for letting me vent- just a little frustrated
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3girls You've really been through a lot with this changing pathology and the re-excision. The typical treatment for Her2+ BC is Taxotere, Carboplatin and Herceptin (TCH). Herceptin is given throughout chemo and then continues every 3 weeks for 1 year (it's an infusion as well). Many of us receiving TCH also opt for a port due to the increased number of infusions.
Keep us posted. If you are triple positive, you are in the right place. There is also a very active board "Taxotere, Carboplatin and Herceptin" if you end up with that treatment. In the meantime, vent away-we're here and happy to listen.
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3 girls ...my pathology flip flopped a bit too..from the biopsy to the mx. And I didnt get clear margins and had to get re-opened too. It was actually very simple though!
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Thanks dragonfly1- are there many s/e with the herceptin? Geewhiz- I see u had a mastectomy did u start off with a lumpectomy and then end up with a MX? The re-exicions were easy just very difficult with the waiting:)!!
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3girls Most people have minimal SEs from Herceptin. I had cold-like symptoms with the first infusion but never had them after that and many people complain of joint pain. The most serious potential SE is a change in heart function. If you are on Herceptin you will have an echo or MUGA scan every 3 months to monitor your heart. I've had no change in heart function and I only have 2 1/2 months left.0
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SpecialK thanks for your good wishes, i hope i never get a headache that horrible too!
they did give me benadryl that just made me sleepy during the 3 hours but didnt really change anything in the end. Any tips to avoid the crazy tongue mutation the week after chemo?
3girls I'm also on TCH if you have any questions
Have a good week ladies!
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found this site for foods that are not recommended while on herceptin,
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3girls, herceptin isn't a chemo drug, but it does have to start out with chemo. dragonfly is right that it usually continues for a year through infusion. i've had it five times so far, but with chemo, so i don't know if any of my se's were from herceptin or just from chemo. however, my se's were minimal and i've read here that there really aren't any horrible se's with herception. i urge you to research the story about herceptin. it's truly a 'miracle drug' for those of us who are her2 positive. good luck on the 21st. i home you get really wonderful news!0
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I finished Herceptin this past Sept 6th. What I notice is my hair is growing a bit faster, I'm retaining a bit less fluid (although that could have been left over from chemo too) and my thighs are not as stiff. I am Anastrozole so there's a little stiffness from that but most of the thigh stuff was Herceptin. Fingers and toe stiffness from Anastrozole.
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awnooo - my tongue often felt burnt and/or tingly but it resolved by the next tx. I did not have the metallic taste, although food did not taste good unless it was salty. Even then it didn't taste great! I never had thrush but I did have mouth sores on the first tx. My MO had samples of a drug called Caphosol, which is 2 ampules you mix together and immediately swish in your mouth and spit out. It worked like a champ and I stayed away from the acidic foods and didn't have any more sores. Interestingly, now I seem to always have one. I am wondering if Herceptin might be causing that.
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No 3girls, I had to get a re-excision AFTER a bmx!! Go figure!! They didnt get clean margins, but by that time i had already started chemo, so they opted to wait until I was done. When they went back in, there was no cancer in sight...all clear margins. So I have a bit of a sense of relief that although I got 2 surgeries, my tumors responded to the chemo. Well, I should have peace of mind. I dont. I will forever be looking over my shoulder. I do yoga, I run, I swim, I meditate, I laugh things off at work. Why cant I find peace of mind? I am reading a book with the Dalai Lama in it. He talks about monkey mind...where the untrained mind bounces all around in the quest for peace during mediation. That's me. Monkey Brain.
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geewhiz - crap! I am a monkey too! I just completed participation in a research study on Mindfulness Based Stress Reduction at the Univ of So Florida. During the meditation parts I was making a grocery list and listening to the air conditioner!
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Lol Special K....
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Ahh me too, I suck at meditation.
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Specialk, Omaz and Geewhiz so that explains it-I'm a monkey too-welcome to the jungle:) I've always wondered if I'm a touch ADHD because I just can't sit still long enough much less focus my mind to meditate and my thoughts end up wandering aimlessly. Seriously, during chemo I had a terrible time concentrating and found it almost impossible to read a book (which I normally enjoy). I'm finally getting back to the point where I can focus again. I don't know if I had a touch of chemo brain or if it was just plain exhaustion causing the concentration problems...0
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I like to think it means that we are super-smart and just have a lot of stuff to think about and not a minute to waste! That's my story, and I'm sticking to it!
Seriously, I had trouble concentrating too - and could only read magazines during chemo because the articles were short - or I could just look at the pretty pictures. I think the shell-shocked aspect of diagnosis and treatment during that first 6 months makes that happen. Kind of like fight or flight - but we don't know which to do, so we do both. Fatigue diesn't help. It was interesting that during the classes at the research study the instructor knew we weren't concentrating during the meditation and he would tell us it is normal to have your attention wander, just to try to get back on track. He said it takes a long time to train your mind to stop wandering.
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Glad to hear I am not alone in the jungle
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Hi, I'm looking out from the jungle too.......from monkey brain #2345556677777!
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I am pretty sure we are all in the same jungle!
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I had a migraine, Awnoo, with my first treatment. And during my surgery. I was allowed to take my migraine prescription during my infusion, which my family doctor had given me. It worked great. They did not give me Zofran because of the headache. Now I'm on Inderal (propranolol) to prevent more headaches since I was having a lot, and it is working great, too. It wasn't the TCH, I don't think. I think it was the stress, but I am prone to migraines anyway. Get some headache scripts-it's a better quality of life!0
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NancyJill Re: the migraines. I've had frequent migraines i.e. 10-12 every month since my early twenties (I'm 42 now). I've taken a variety of prescriptions and in recent years have also been on an anti-seizure med (Topamax) in an attempt to prevent them. I had several migraines at the beginning of chemo but would you believe that once the chemo induced menopause/chemopause and my periods stopped, the migraines stopped too? I would not have believed it was possible but I have not had a single migraine since April of this year! Makes me wonder if my hormones were the problem all along.0
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THANK YOU LADIES! have a good weekend
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Fellow monkey brains.....count me as one of your fellow members!
My Indian onc teaches yoga and focuses on breathing. i have my eyes closed and can focus for about a minute, then i am making lists.
I did read Buy a great book/cd before first surgery called Prepare for Surgery....Heal faster. The cd has the lady talking with visualization and a hearbeat sound in the background that slows through the 20 minutes. Somehow it is helpful.
I like to think it is because i am just so smart I can multi task that well too. Lol. Probably just type A issues.0 -
I am definitely a fellow monkey brain. Anyone else have rekki (sp?) at their centers? Mine offers it. I had it at Herceptin on Wed. My mind was wondering through it, but it completely relaxed me. Apparently it relaxed me a little too much because the tech came in to take my bp and it wa 83/55. Had to get it taken again after infusion before they'd let me leave. During infusion, a nurse came in and asked if I'd do a survey for some kind of study they're doing. So I said sure. It was all about hospice and making your wishes known and palliative care. I had no problem passing the bp test before I left.
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Kay.....holy cow. That is so wrong. I would probably have been in heart failure.
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I know. I asked the nurse how why they picked me to do the survey. She said they were asking everyone who had chemo that day, even showed me her list. She also told me I was the third patient to ask that. It had me pretty upset.
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